Today is Rare Disease Day 2018. Creating more awareness can help people receive the treatment they need. Read more on what is classed as a rare disease and the common problems faced here: http://bit.ly/2Fa3897
read more >>Not So Rare
Acheson Kerry 13 April, 2017Tom and Tim finally reach a diagnosis after finding genetic faults known as AGU. The doctor couldn’t tell them much more, so they were sent to a rare disease specialist for further consultations. For Tom and Tim, and their families, it’s been a long process to reach a clear diagnosis. Sadly, like many other rare diseases, there is no therapy or treatment available. Rare diseases affect more than 350 million people worldwide. We need to support people like Tom and Tim to raise awareness of the long and stressful journey through to diagnosis, to understand the reality of living with a rare condition and to support those families affected by a rare disease.
read more >>Upcoming Rare Disease Blog posts
Acheson Kerry 28 February, 2017In support of #RareDiseaseDay we are launching a series of blog posts to illustrate the length of time it takes for a child living with a rare disease to receive a diagnosis. The process will be reviewed, from the parent’s perspective looking at the initial symptoms and beyond. Follow the link to find out about Tom. https://onyx-notsorare.tumblr.com/ Stay tuned over the next couple of weeks to find out what happens. #notsoRARE Engel PA, Bagal S, Broback M, Boice N. Physician and patient perceptions regarding physician training in rare diseases: The need for stronger educational initiatives for physicians.
Journal of Rare Disorders, 2013; 1(2): 1-15.
read more >>The Importance of Medical Communications for Gene Therapy
Prime Global 29 January, 2016We are excited to be speaking at the Cell Therapy Manufacturing & Gene Therapy Congress about the importance of Medical Communications for Gene Therapy. Find out more on KNect365 https://knect365bioprocessing.com/2016/01/29/prime-medical-group-value-medical-communications/
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